My name is Sonia and I am a 26 year old psychotherapist in training with Generalized Anxiety Disorder, Bipolar 2 disorder, and suspected adenomyosis and endometriosis. I have always struggled with severe pelvic and abdominal pain during periods, nausea and vomiting, cramping, heavy bleeding, and migraine headaches but starting at age 20 my symptoms started to appear regardless of where I was in my menstrual cycle.
As a wellness advocate and future therapist, I have long advocated for increased care and understanding to those with mental illness and/or chronic illness, dynamic disability.
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
I do not have an official diagnosis! I am proceeding with treatment (IUD, pelvic floor therapy, holistic care) with my “suspected’ status. I am holding off surgery as long as possible due to prior medical trauma and having had major spinal surgery at age 17.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
PAIN (period pain is NOT normal but I did not know this growing up), chronic nausea, migraine, fatigue, decreased appetite, insomnia, painful intercourse, painful bowel movements are all symptoms I currently live with and try to manage. I have flare ups which are more severe but consistently experience these symptoms as they ebb and flow.
What was your experience with healthcare professionals during the diagnosis process? Were there misdiagnoses or misunderstandings? Did you experience any dismissive attitudes regarding your symptoms?
I am still deep in my medical journey and trying to understand my own health in order to be the best advocate for myself. As a teen I experienced the medical system extensively as I received a full spinal fusion for scoliosis. So, when I started seeking help for my endo/adeno related symptoms I had been a “patient” for a long time and understood the limitations to healthcare. That being said, nothing could prepare me for the isolation, invalidation, and pure lack of empirical research on women’s health concerns. Most recently, I had an IUD put in for pain management and was told that endometriosis “affects so many women and isn’t really a thing” LOL
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
It certainly affects my mental health. Feeling ill, tired, or simply not your best self frequently is HARD. The combination of living with mental illness and a chronic illness is a unique challenge I never expected to live with and is something I am still very much coming to terms with. I find it’s hard not to feel “unreliable” just because my body is unreliable. As a young adult, I also feel sad sometimes seeing peers who are able to do so many different things and feeling limited.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I have wonderful bosses who appreciate the chronic illness that I experience, allow me to work from home and/or take time off whenever necessary. Their empathy and validation has been life changing for me in helping me achieve my career goals. I have a wonderful partner, friends, and family who do their best to support me and who do not make me feel bad about a condition that is often beyond my control.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I am still searching!
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
When I started struggling with endo, I was a full time children’s behavioural therapist and I had to transition out of this role (which I loved) due to not being able to physically keep up any longer. Further, I was fainting and felt I was putting myself and my young clients at risk. I have since found a role I love and am continuing my educational journey with my Masters in Counselling to become a psychotherapist. My social life has been incredibly affected and has changed a lot. I have become quite the homebody and my circle has become smaller but consists now of people who understand my limitations and on a bad day are happy to sit with me on the couch to be in my company!
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Therapy! Although this cannot changed my body or physical symptoms it has be integral in transitioning into the “new normal” of my life and learning to love all parts of myself, even those parts that challenge me or make me sad at times.
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
The birth control pill!
What do you wish you knew earlier in your journey?
That I am not alone, that period pain is NOT NORMAL, and that we need people to be open about their experiences in order to move us forward!
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes! Namely you Emma have been a huge huge inspiration to me. The facebook group has been lovely to feel less isolated and to know even on days where I feel so down because of my chronic illness that I am not alone.
Are there any misconceptions about endometriosis that you've encountered?
Yes! That it does not exist, that if your ultrasounds are clean it can’t be endo and that endo can be cured!
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
As overwhelming as it feels right now, life will go on and you will be okay. We all have baggage that we carry with us and you have this. That’s tough (I wont lie) but so are you. I have found I now appreciate the little and the mundane so much more in my life. Although, my life now is challenged by my chronic illness my mindset is strong and confident and I know that life holds so much for me even with my illness.